Involving People in Their Own Care
The Catalyst Care Group’s white paper and recent systematic review reveal that over 40% of people want to be directly involved in their care. Despite minimal change in these figures over the last decade, there has been a growing emphasis on expanding participation—a goal that we are committed to achieving.
Treating people who require complex care as equals creates space for them to be actively involved in decision-making about their own care. This ensures their needs and preferences are central to their unique care plan. By considering the person as a whole and respecting their autonomy, health and social care providers can create care plans that truly belong to the person, only implementing or sharing these plans with family members, health professionals or other stakeholders if the person consents. The person-centred approach enhances the satisfaction of the care they receive.
The benefits of involving people in their own care extend personal satisfaction to broader systemic improvements. NHS England has committed to empowering people to manage their own health and make informed decisions about their treatment, which has been shown to improve health outcomes and experiences of the care recipients. National surveys reveal that a significant number of people feel actively involved in their care decisions. This involvement is linked to improved outcomes and efficiency savings for the health system, achieved through enhanced prevention and supported self-care. By supporting people to develop the knowledge, skills, and confidence needed to manage their health, the health systems can become more responsive, ultimately leading to better health and social outcomes and reduced strain on resources.
Why Is It Important to Involve People in Their Own Health and Care?
When we give people control over their care, we must be aware that these actions profoundly affect their lives.
The substantial question “What matters most to people who require complex care and support?“ should be at the forefront of our minds, guiding our daily work, actions, and reactions. But do we truly understand what that is? At the core, people want to be seen as people at the centre of their care rather than being fitted into services. With intentional focus on person-centred, outcome-based, and place-based approaches, we can ensure that care is integrated and tailored to genuinely support each person. These principles are the foundation upon which we, as social care providers, must build our support.
James, a young man that Leaf Complex Care supports, began to overcome significant challenges and live a more fulfilling life after his needs and preferences were directly involved in his care plan and support. Besides gaining greater confidence and making personal choices, like where he goes and what he likes to do, one of the defining moments in his care journey was moving into his own home. This transition made us all realise the importance of involving people to tailor their care and having the right support at the right times. It also marked a significant step in his overall well-being, allowing him to experience a sense of ownership and control over his living environment.
Please take a moment to learn about James’ continuous journey towards a life that truly matters.
How Do We Involve People in Their Care?
Involving people in decisions about their care is fundamental to the principles of the Mental Capacity Act and should be evident in every care and support plan. This approach ensures that care planning is tailored to the person’s goals and aspirations, focusing on what they want to achieve with their care and support. Being truly person-centred means recognising people within the full context of their lives, not just focusing on their challenges.
Personalised Care and Support Planning
The NHS Long Term Plan emphasises giving people more control over their own health and providing personalised care when needed. The foundation of personalised care lies in meaningful, person-centred approaches and conversations. These discussions allow people to express their values, concerns, and aspirations, guiding the creation of a care plan that genuinely reflects their unique circumstances. Personalised care and support planning result in tailored care plans co-produced by the person and their care team. These plans are flexible, regularly reviewed, and adjusted as needed, ensuring they remain relevant as circumstances change.
Systematic support often includes integrated care teams, often including GPs, nurses, social workers, and specialists, who work together to deliver a cohesive and continuous care experience. This collaboration ensures that care plans are effectively implemented and any barriers to achieving personal goals are addressed.
Shared Decision-Making
Shared decision-making is fundamentally a joint process where healthcare professionals and the people who require support work together to make care decisions. This collaboration ensures that the person’s preferences, beliefs, and values are integrated with the professional expertise on treatment options, evidence, risks, and benefits.
Healthcare research consistently shows that shared decision-making leads to better person-clinician relationships, improved adherence to treatment, reduced treatment regret, and increased satisfaction with healthcare outcomes.
Individual Health Budgets and Integrated Personal Commissioning
The shift towards personalised care places people at the centre of their health and well-being. This approach is epitomised using personal health budgets (PHBs) and Integrated Personal Commissioning (IPC). A personal health budget is an allocation of NHS funds designed to support a person’s health and well-being needs. This budget allows people to manage their health, social care, and support, including treatments, equipment, and personal care, in a way that suits them best.
IPC represents a significant step towards a more holistic approach to care. IPC blends comprehensive health and social care funding, allowing people to direct how this combined budget is used to meet their needs. For IPC to be effective, local systems must prioritise the development of integrated personal budget offers, co-produce models with people with lived experience, and ensure a strong focus on developing local service providers.
Equal Access to Health and Social Care
It is crucial to tackle health and care inequalities to ensure that every person has fair access and improved care outcomes. By focusing on these inequalities, healthcare systems can work towards providing equitable care for all people, regardless of their background, culture, or circumstances. Achieving health equity requires valuing everyone equally and making focused, ongoing societal efforts to manage avoidable inequalities and social determinants of health.
What can be done to improve equal access?
Implementing inclusive policies and practices
Continuous equality and diversity training
Integrating community-based organisations
Monitoring and evaluating progress
Different Perspectives of Involvement
In health and care systems, the concept of people’s involvement is multifaceted and driven by various perspectives, each shaping how we involve people in their care.
These perspectives include:
Democratic Perspective
This view emphasises that as citizens with political, social, and economic rights, people who use or are impacted by public services should have a voice in their governance. It recognises that people are entitled to participate in decisions about the services they receive.
Person-Centered Approach
The person-centred approach focuses on coordinating care around individual needs rather than standardised care models. True power lies in the person’s active involvement, enabling more personalised, adaptable, and responsive support.
⇒ Learn more about the importance of a person-centred approach and person-centred care planning.
Ethical and Outcome-Based Approach
This approach values integrating ethics with outcome-based practices, ensuring that decisions are made with a clear understanding of the risks and benefits involved.
Values-Driven Approach
To maximise the efficiency of the health and care system, it’s essential to understand and address what people need and want. This perspective ensures that care aligns with personal preferences, providing both necessary and desired care provision.
Sustainability
With an ageing population and the rise of long-term conditions, engaging people in managing their own health is crucial. This approach promotes wellness and independence, reducing reliance on care provision and easing the resource strain.
Focus on Rights and Responsibilities
Every person receiving health and social care deserves to be treated with dignity and respect. This fundamental right ensures that people are valued and their personal worth is recognised in all interactions with healthcare providers. Providing all relevant information about their treatment options, including risks and benefits, is necessary to make an informed decision about their care.
Confidentiality is a cornerstone of trust in healthcare. People have the right to expect their medical information to be kept private and secure and only shared with those directly involved in their care.
Health and social care providers have the responsibility to:
- Follow Human Rights-Based Approach
- Follow Legal Frameworks and Safeguarding
- Provide Accurate Information
- Follow Agreed Care Plans
- Treat People with Respect
- Uphold Safety and Ethical Standards
- Commit to Equity and Inclusion
People are entitled to the following rights:
- Right to Participate in Decision-Making
- Right to Safety and Protection from Harm
- Right to Access and Fair Treatment
- Right to Legal Recourse
The Positive Impact of Involving People in Their Care
Involving people directly in their care leads to better health and social outcomes, as it encourages adherence to treatment plans and enables a sense of ownership over their well-being. This involvement also enhances satisfaction by making people feel heard and respected, strengthening their trust in healthcare providers. When care is tailored to people’s unique needs and preferences, it reduces the need for intensive interventions and unnecessary hospital visits.
Moreover, active involvement in care gives people greater control over their lives. It promotes preventative care and fosters stronger relationships between people and providers. By making the care process more collaborative and transparent, healthcare systems can become more efficient and sustainable, benefiting both people and the broader community.
Leaf Complex Care Always Involves People in Their Care
Leaf Complex Care adopts a holistic and collaborative approach to care by involving care recipients, their families, and a multidisciplinary in-house therapy team in the process. The team includes Positive Behaviour Support (PBS) specialists, occupational therapists and speech and language therapists who work closely with the people we support to develop a comprehensive care plan that focuses on all aspects of well-being.
By actively integrating people in discussions about their care, setting goals together, providing support during challenges, and supporting their strengths, Leaf Complex Care ensures that people are active participants.
Leaf Complex Care’s offices are located in Bristol, South East, Birmingham and Somerset.
Leaf Complex Care is part of the Catalyst Care Group. Last year, we conducted our first Catalyst Care Group Survey. We published a white paper containing responses from over 200 support workers, commissioners and families, outlining the current state and challenges in the UK health and social care system. We believe involving people in care is necessary for positive outcomes and progress. If we want to see change in care provision, we need to act now.
White Paper Publication 2023
Download the White Paper Publication and stay up to date with the current state of the UK health and social care sector.
